Abstract

Background: Information and social support for women at risk for and surviving breast cancer are essential components of comprehensive clinical and public health practice in breast cancer prevention, control, and treatment. Jewish women in the US are a population of special concern due to their increased hereditary breast cancer risk for carrying BRCA1/2 gene mutations, and the dearth of culturally-relevant resources for breast cancer education and counseling. As part of a CDC initiative, Sharsheret (a non-profit breast cancer support and advocacy organization) is scaling-up its programs and services for women of all Jewish backgrounds to better meet these needs, guided by program evaluation data on client engagement practices. This abstract describes these practices and survey results.

Methods: Evaluation surveys were individually-administered via e-mail using a secure online platform. Survey invitations were sent to participants ~30 days following their utilization of Sharsheret program services. Evaluation domains included program engagement and satisfaction, health-related quality of life, and resource needs.

Results: The survey response rate was >65% (N=111), and a majority of respondents reported that they were Jewish (75%), married (76%), either or 35-45 years old (35%) or 46-64 years old (48%), and from the northeast region of the US (56%). Most respondents (88%) reported a previous breast or ovarian cancer diagnosis, and 7% indicated they carried a genetic mutation known to increase breast cancer risk. Based on the CDC's 'Health Days' measures, respondents reported a higher number unhealthy days (M=12 days per month) relative to general population averages for adult women (M=6.9 days). Respondents rated their experience with the organization highly (M=4.7 out of 5) for overall satisfaction with the quality of services utilized. There was also strong agreement among respondents (M =4.6 out of 5) about the availability and utility of patient navigation services, and the survivorship program garnered the highest level of engagement (71%) as it was utilized most often by respondents for its healthy living and nutrition resources.

Conclusion: Nonprofit organizations devoted to cancer support and advocacy fill important roles in educating and counseling women about breast cancer prevention, control, and treatment. In an era of precision medicine and discussion of population-based screening for hereditary breast cancer risk, these organizations must scale-up their information and support services. This is necessary to be available for a greater number of women, and can be expected to perform even more important and essential roles, especially for Jewish women at risk for and surviving breast cancer.